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Wednesday, February 26, 2014

Lessons from our First (Known) At Home Fracture

Isaiah's arm fracture happened at some point on Sunday. Monday morning was our first time that we were confident OI was rearing it's ugly head, and yet we still questioned the daylights out of it....because when I say we were confident...I mean we were confident that I should ask some OI experts (aka experienced parents) what they thought...haha

I posted a video to Facebook of Isaiah in his swing on Monday morning calling all "OI experts" and they agreed with what we thought- definitely an arm break (at the time it looked like his leg was broken too...but after Isaiah had a party in his pants, he started moving both of his legs again, and we knew that his leg issues were due to a belly ache/constipation).

If you read our last post, you know we were already going to DuPont anyway, so we lucked out and got to see Isaiah's doctor who agreed that he had a fractured arm- no x-ray was needed given Isaiah's response when his arm was lightly squeezed. We splinted and went home, swaddled him for the night and then, after a number of OI parents messaged and commented, decided to immobilize Isaiah's arm during waking hours too; we did this by just closing his shirt over his arm.

He's handled it really well.

In the past, this is what we learned when looking for evidence of a fracture:

1) Babies with a break will self-splint.

2) They will have an elevated heart rate.

3) They will sweat more and have an elevated temperature; that's their body healing.

4) If a baby shows any symptoms of a break, medicate and splint.

5) If you choose to go to the hospital, fractures won't always show up on x-rays, especially when the break is fresh. For kids like Isaiah, usually you see the new callus forming on the bone instead of the actual break.

We've learned a number of things from Isaiah's first (known) fracture at home:

1) Self-splinting for Isaiah means his limb is dead weight. We thought he'd pull it in to his body to protect it, but instead he lets it hang.

2) His heart-rate really wasn't elevated. He still slept with his heart rate in the 90s. When he was playing, he'd be in the 130s-140s. I thought "elevated" meant that he'd sleep with a heart rate in the 130s, this was not the case for Isaiah with this fracture.

3) He was sweating and had a temperature of 99.3 so these are definitely things to look for in the future.

4) We need to trust our guts and just medicate and splint the poor guy! Knowing he was likely in pain before we finally accepted the break is just heart breaking.

I'm so grateful to my Facebook friends who commented on the video. Some with OI themselves, some parents/spouses to those with OI, and some with no OI experience but wanting to help and show they care in any way possible. One of the big reasons we questioned if Isaiah had a break was because he was laughing and smiling so much. "He can't have a break if he's this happy", we thought. Wrong. We had a number of responses saying those with OI still smile through breaks, I'm grateful for the reality check...and for my amazing baby, so strong, so resilient.

Here we are, 2 days later, and he's moving his arm like nothing happened. I let it loose for a bit to give him a good sponge bath and he was moving like normal. I spoke with Dave (who was at work when I bathed Isaiah) and he and I agree that when Isaiah wakes from his nap, I'm going to rewrap it as a precaution. I also spoke with a number of experienced parents who agree to keep it wrapped.

Enjoy your moment of freedom, left arm.

Tomorrow is the big day- surgery day. This break has distracted me [from wanting to puke all week] from nerves due to Isaiah's first surgery. It's necessary but scary. My poor baby is going to be put under anesthesia. He's going to be cut open (just a little, but still). I know the positive to this- accessing him for his Pam treatments won't be nearly as traumatizing as they could be. Sticking him and trying to get an IV without a tourniquet? Awful. He's going to be under for hours because they are also going to clean out his ears, possibly put tubes in, and do a hearing test that takes 2 hours itself (it's called an ABR).

Please send some prayers up that everything goes as smoothly as possible and that Isaiah handles being put under...and maybe a few that he won't be a starving mess beforehand, because that will be one long morning for us! You can't explain that you can't eat before surgery to a 6 month old. :-P

Do You Believe?

Welcome to our Blog!

Hello! My name is Vicky. My husband, Dave, and I started this blog to share the latest news about our son, Isaiah, and his condition. He was born on August 11, 2013; he has Osteogenesis Imperfecta (OI), which is commonly known as brittle bone disease. He has type III, which is one of the most severe forms that you can live with.

I write to share our story, to share Isaiah's LIFE, and to spread awareness of OI.

We were recommended to terminate our pregnancy when the OI was first discovered. My hope is that if another couple is blessed with an OI baby, and they happen to Google, that they will be brought here and shown that miracles do happen and that OI is no show-stopper.